Lack of chatter about the Ketogenic Diet

Sasha

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@ryan31337 (thank you for being so patient with all my questions!) - I see that in the book, there are four phases of the diet, and that not everyone does all of them (not surprisingly, the focus of the book is on weightloss and so the weightloss rationale for the phases doen't apply to me).

Which of these did your doctor recommend that you go on? How are you supposed to work out your ideal carb thing, if you're not on it for weight loss?
 

ryan31337

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Hi @Sasha,

No problem, happy to share experiences. I appreciate big gains on keto might only apply to 1 in 100 of us... but simple dietary change is probably the easiest, cheapest and most accessible 'treatment' i've come across, so why not try, hey.

I see it as taking me from Moderate back to Mild ME. I suppose it could be argued that I was actually just suffering from mild ME + co-morbid reactive hypoglycemia, and that I just fixed a separate problem with diet. I'd be keen to hear if anyone wants to discuss that further. Having now seen the similar experiences of others I would guess that RH is an under-recognised dysregulation that can appear with ME - or perhaps that a keto diet is an under-used intervention!

My endo suggested staying in Phase 1 (20g carbs p/day). I found that difficult because of the dairy & other intolerance, so I started more or less in Phase 2 (nuts & more vegetables) with about 30g carbs p/day and have maintained that. It appears to be quite personal as to how many carbs you can tolerate and stay in ketosis. I have also heard others suggest its more about maintaining the ratio of macros rather than strict numbers, within reason. So if you have a little more carbs you need a lot more fat - unsure how proven this is.

https://keto-calculator.ankerl.com/ - I used this site to calculate my ideal macros to begin with.

https://www.amazon.co.uk/Bayer-Ketostix-Reagent-Strips-Ketone/dp/B008ETHFN4 - I also used these to check for ketosis. There's some contention over how useful these are, bearing in mind they're not actually made for keto diets... I tend to hover around 40 mg/dl '++' and this tends to correlate with my nose (one minor keto side-effect!).

I've not counted calories at all, just eaten until satisfied. I dropped 5kg on the diet without trying but have now stabilised at my previously healthy weight. Beforehand I had slowly gained that 5Kg, presumably because of inactivity and overeating due to inappropriate hunger.
 

Sasha

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So your endo wanted you to stay in Phase 1 in the long term? Yikes.

Thanks for the info (and for those resources - very useful!).

Yes, I also wonder if this is going to be one of those "works for a subset" thing and that none of us will know if we're in the subset before we give it a go...
 

ryan31337

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So your endo wanted you to stay in Phase 1 in the long term? Yikes.
In truth i'm not sure, he suggested Phase 1 and then report back after 2 months. I did that and because I had reported how well I was doing he suggested there was no need for a further appointment - primarily to save me money as I was self-paying.

I'm seeing him again on the NHS in a few months, I'll quiz him about it then. I would guess its up to you to experiment and find a happy medium.
 

sb4

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In truth i'm not sure, he suggested Phase 1 and then report back after 2 months. I did that and because I had reported how well I was doing he suggested there was no need for a further appointment - primarily to save me money as I was self-paying.

I'm seeing him again on the NHS in a few months, I'll quiz him about it then. I would guess its up to you to experiment and find a happy medium.
I think northern european mitochondria are best with high fat, low carb. Sadly I have trouble with this thanks to gastroparesis.
 
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A serious word of warning about Keto diets long-term. 18 months of eating very low carb is how I ended up a long time reader on Phoenix Rising. It wrecked my life; this is not an exaggeration.

Six months in on the diet, I thought I had found the secret to the universe. I had increased energy, had lost significant weight. I read everything about low carb diets and keto. 18 months in I could barely leave the couch, couldn't read a book, had trouble watching a television program, and was planning to find a low paying job as my best alternative, having lost the capacity to work as a professional. I could only work 30 minutes a day. My brain fog was terrible. My BP and pulse skyrocketed, I could barely sleep more than three hours at a time, my energy capacity was destroyed.

I joined offline discussion groups with other low carb wrecks - these wrecks are everywhere. It has been a very long road back from keto for me. I think the long-term destruction to the microbiome on keto is what caused this. The rebuilding takes a long time.

And for those interested in the science of this, follow Kevin Hall. He's well down the path to debunking the "metabolic advantage" of keto. I think if you look closely you'll see that very low carb diets reduce energy availability - in many people - compared to very low fat diets.

Maybe there's some relatively healthy person who needs to lose 20 vanity pounds and is able to tolerate keto long-term. Good for them. Enjoy the bacon. I do know keto is necessary and useful for some neurological conditions but unless you have one of those, don't take the decision to pursue this path lightly.

Apart from that, Mrs. Lincoln, the diet is fabulous.
 
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Sidereal

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Years ago I had fantastic results with a ketogenic diet in the short term. If you had asked me four months into my "journey" I would have been singing its praises too. My energy and functional capacity improved by 20% and I was never hungry. I was able to exercise a lot. My reactive hypoglycaemia resolved and I lost a lot of weight.

Long term it was a disaster. A year in I started to crash energy-wise and by the 18 month mark I was bedbound. (Previously I was a fully functional person working full time.)

The scariest part about these diets deficient in microbiota-accessible carbohydrates are their long term, possibly permanent sequelae. Common issues in low carb / paleo online communities are the development of an ever-growing list of food intolerances, "adrenal fatigue", "hypothyroidism" and other bogus diagnoses pointing to a dauer-like state following long-term glucose restriction i.e. starvation metabolism.

Anyway, thanks to starving my gut of prebiotics for so long due to elimination of grains, legumes and resistant starches, I developed mast cell activation syndrome (MCAS) which, unless you've experienced it yourself, I cannot convey the depth of horror of this condition. If you think ME/CFS is bad, this is a whole new level of hell. Getting allergic reactions to all food including anaphylaxis is a nightmare. I know several people who developed severe MCAS after long-term ketosis and many people who gradually over time ended up not being able to tolerate food groups that they previously tolerated.

The reason why this diet is so potentially dangerous and why its negative effects on the energy metabolism can be so long-lasting lies in its effects on the composition of the microbiome. A recent short-term study of normal people fed an animal-based very low carb diet vs low fat plant-based diet showed the detrimental effect of keto on gut composition and pattern of SCFA production very similar to what Armstrong reported recently in ME/CFS patients. On the keto diet they saw a shift towards breaking down protein to make butyrate and a collapse in reductive acetogenesis. In other words, you're looking at worsening the very fundamental metabolic derangement you're dealing with in the first place--inability to get acetate / acetyl-CoA from carbs. Human beings are not meant to derive energy this way 24/7, it is a stressful and inefficient way of fuelling yourself. Protein catabolism in the gut has many deleterious consequences. Ketosis is a backup plan for when the main fuel source--glucose--isn't available and you need to survive until you can find your next meal. Ketosis and fasting are great intermittently but we did not evolve to be in starvation metabolism forever.

http://www.nature.com/nature/journal/v505/n7484/full/nature12820.html

Yes, a ketogenic diet may very well give you more energy because it ramps up your catecholamines and once you remove the carbs from the diet you will get some energy from ketones and you will side-step the pyruvate dehydrogenase problem which will result in an acute reduction in lactate but don't mistake feeling better for actually being better. There are lots of ways of making yourself feel like you have more energy while in actuality worsening your underlying condition e.g. steroids, stimulants etc.

Btw, Naviaux reported that women with ME/CFS have problems with beta oxidation i.e. making energy from fat. Before keto this wasn't an acute problem for me. After long-term keto my ability to extract energy from fat collapsed and I developed an intractable feeling of hypoglycaemia despite actually being mildly pre-diabetic (another consequence of long term low carbing for me was development of insulin resistance; prior to that diet my blood glucose was always normal). Having to depend on gluconeogenesis to maintain blood glucose level is another source of stress and energy depletion for the liver because the process costs you ATP. When my condition became severe my energy would drop to literally zero and I wasn't able to even stand up if I went without eating for more than a few hours. In other words, my ability to fast was completely obliterated. Given the documented problems with fat metabolism in women it's questionable how many here would be able to tolerate this fat-based diet.

Plant vs animal SCFA.png
 

sb4

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@Jay franklin @Sidereal
Eating seasonally should be the solution to this. Low carb winter , high carb summer. When you are long term low carb you can have trouble generating super oxide in your mito, you need this to replace bad mito with healthy ones. If you increase carb in summer that should be enough
 

ryan31337

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@Jay franklin, @Sidereal,

Thanks for weighing in and giving us the benefit of your experience, its certainly not lost on me. Though I'm not totally convinced ketogenesis itself is ultimately the bad guy.

I started the diet in a very similar state to how you both ended up - RH, no energy capacity, brain fog, autonomic instability, histamine intolerance/MCAS, wonky adrenals & endless gut problems. My doctors also came to the same conclusion: disrupted microbiome/SIBO/leaky gut etc. due to GF and increasingly lower and lower FODMAP diets to combat increasing GI symptoms over several years.

As it seems for various reasons that we are predisposed to falling down this hole, it would be interesting to know if you, like me, would've ended up there regardless of a keto diet. e.g. following food poisoning, antibiotics, progression of illness etc.

I am sure a large part of the keto diet benefit I am getting currently is due to starving the bacteria of carbs - a more extreme version of low FODMAP, which had already proved helpful short-term. It's pure conjecture from someone that doesn't really know much about how this works, but I wonder if perhaps over time the composition of the bacteria will shift and I will end up becoming more unwell again due to overgrowth of bacteria that can feed off protein, rather than carbohydrate, which is maybe where you guys ended up? Incidentally the endo that put me on the keto diet in the first place also suggested long-term pre & probiotic supplementation...

Of course with all that said, I'm in full agreement that its probably best a temporary measure and have plans to adapt & return to a more normal diet over time. I have recently done a SIBO test and will explore that path for a while, with anti-microbials and a SIBO Bi-Phasic diet approach. Failing all that I guess it may be sensible to see what happens with break periods.
 
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@Jay franklin, @Sidereal,

Thanks for weighing in and giving us the benefit of your experience, its certainly not lost on me. Though I'm not totally convinced ketogenesis itself is ultimately the bad guy.

I started the diet in a very similar state to how you both ended up - RH, no energy capacity, brain fog, autonomic instability, histamine intolerance/MCAS, wonky adrenals & endless gut problems. My doctors also came to the same conclusion: disrupted microbiome/SIBO/leaky gut etc. due to GF and increasingly lower and lower FODMAP diets to combat increasing GI symptoms over several years.

As it seems for various reasons that we are predisposed to falling down this hole, it would be interesting to know if you, like me, would've ended up there regardless of a keto diet. e.g. following food poisoning, antibiotics, progression of illness etc.

I am sure a large part of the keto diet benefit I am getting currently is due to starving the bacteria of carbs - a more extreme version of low FODMAP, which had already proved helpful short-term. It's pure conjecture from someone that doesn't really know much about how this works, but I wonder if perhaps over time the composition of the bacteria will shift and I will end up becoming more unwell again due to overgrowth of bacteria that can feed off protein, rather than carbohydrate, which is maybe where you guys ended up? Incidentally the endo that put me on the keto diet in the first place also suggested long-term pre & probiotic supplementation...

Of course with all that said, I'm in full agreement that its probably best a temporary measure and have plans to adapt & return to a more normal diet over time. I have recently done a SIBO test and will explore that path for a while, with anti-microbials and a SIBO Bi-Phasic diet approach. Failing all that I guess it may be sensible to see what happens with break periods.
@ryan31337 i'm in a somewhat similar situation re having both ibs and sibo. i have always had problems with carbs. i get bloated and sick from oats. i have been doing keto for about five months now an have had a very impressive increase in energy and reduction of symptoms. my situation is different in that i had a stage IIIA melanoma resected last year. so, for me, the intersection of using keto to pressure tumor cells' energy metabolism and address the mitochondrial issues that are present in both cancer and CFS made sense. i am more wary after reading your posts, sasha, and i will continue/increase the probiotic elements of my diet as well as take a seasonal break when the summer carbs appear in the farmers market.

the keto road has already had a bump - i discovered that i am sensitive to salicylates - which is something that the current over-focus on coconut (imo) will bring to the fore if it is an issue. my keto is much more reliant on lards, ghee, and fatty meat than vegetarian oils due to the salicylate sensitivity. i think that, for me, this is a good thing as i have always done best with a mainly carnivorous diet. that said, i do eat lots of veg, but always with meat and lots of fat.

re the MCAS, i have histamine intolerance, likely due to damaged gut from SIBO, and i have found that keto improves my tolerance of dietary histamine. i can eat things that i used to have to avoid. i attribute this to the altered gut biome from keto - something which that the article you referenced @Sasha (i can't read it btw - i'm not a subscriber) seems to discuss more generally with respect to any diet alteration.

i'm also now doing ibudilast (30mg), near-IR light, NAD+ and MitoQ, so, i guess i'm very adventurous. i do think that ibudilast is an effective drug for neuropathic pain. i am very much looking forward to fruit of the recent metabolic research in terms of having specific guidances for what to take and when.

so, thanks for the discussion, it has helped.
 

brenda

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Dr Jack Kruse is against keto for summer. He says we need to eat things in season. I was much more able to deal with the carbs I ate in summer and for three weeks in Greece, was able to eat even more though no grains or dairy.

If I go too low my adrenal glands suffer so I stay above keto level.
 

Sidereal

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@Jay franklin, @Sidereal,

Thanks for weighing in and giving us the benefit of your experience, its certainly not lost on me. Though I'm not totally convinced ketogenesis itself is ultimately the bad guy.

I started the diet in a very similar state to how you both ended up - RH, no energy capacity, brain fog, autonomic instability, histamine intolerance/MCAS, wonky adrenals & endless gut problems. My doctors also came to the same conclusion: disrupted microbiome/SIBO/leaky gut etc. due to GF and increasingly lower and lower FODMAP diets to combat increasing GI symptoms over several years.

As it seems for various reasons that we are predisposed to falling down this hole, it would be interesting to know if you, like me, would've ended up there regardless of a keto diet. e.g. following food poisoning, antibiotics, progression of illness etc.

I am sure a large part of the keto diet benefit I am getting currently is due to starving the bacteria of carbs - a more extreme version of low FODMAP, which had already proved helpful short-term. It's pure conjecture from someone that doesn't really know much about how this works, but I wonder if perhaps over time the composition of the bacteria will shift and I will end up becoming more unwell again due to overgrowth of bacteria that can feed off protein, rather than carbohydrate, which is maybe where you guys ended up? Incidentally the endo that put me on the keto diet in the first place also suggested long-term pre & probiotic supplementation...

Of course with all that said, I'm in full agreement that its probably best a temporary measure and have plans to adapt & return to a more normal diet over time. I have recently done a SIBO test and will explore that path for a while, with anti-microbials and a SIBO Bi-Phasic diet approach. Failing all that I guess it may be sensible to see what happens with break periods.
Hi @ryan31337

In the interest of keeping my original post at a tolerable length I didn't provide my full background. I should clarify, I did not say that ketosis caused my ME/CFS, it only worsened it (after initial gains) to a previously unimaginable degree. I have had relapsing-remitting ME/CFS for over two decades, possibly longer. It's hard sometimes to define onset when it's more gradual/in stages.

In my case the precipitating factors were a mixture of possible genetic predisposition (both mother and grandmother have similar though less severe issues), having a pathogenic ME/CFS microbiome passed down at birth which was subsequently further eroded by numerous destructive courses of broad-spectrum ABX in childhood. Each subsequent course chipped a further bit off my functional status so the recovery from each infection (of which I had more than I can count) was less and less complete.

However, my illness was quite mild and I was almost fully functional (80-85%) until I embarked on my first ketogenic diet 14 years ago after figuring out that my carbohydrate metabolism was defective just from observing postprandial symptoms after meals of various macronutrient composition. My grand idea, like many here have now arrived at since the Fluge PDH paper came out, was to cut the carbs and derive all my energy from fat and protein. Because I was clueless about the microbiome angle at the time it seemed so logical on its surface that I spent the next 10 years low carbing on and off with two spells of very low carb ketosis (one in 2003, the next in 2011-2013) both of which resulted in a severe relapse. Plus, my gut symptoms all improved initially, as did energy, joint & muscle pain etc. with acute elimination of FODMAPs. Again, symptom reduction is not a good proxy for whether you are getting better or worse. My mistake was thinking that because my IBS and food intolerances improved in the first six or nine months I was doing something good to my gut.

I think there are many roads leading to the final common pathway we call ME/CFS. The focus on forums like this tends to be folks who ended up here after an infection or toxic exposures or gradual onset. But there are many people out there--the silent majority--who have never heard of ME/CFS and have no idea they have it. They simply carry on labouring through their day with no diagnosis or under incorrect or incomplete diagnoses like depression. I think unless you end up moderate-severe you tend not to pursue a proper diagnosis.

Prolonged glucose restriction, which mimics caloric deprivation and starvation metabolism, seems to be a common point of entry into a dauer-like state of metabolic conservation; you can find many anecdotes online including high-profile bloggers who messed themselves up well and good with VLC. The situation is complicated by the fact that dieting itself (regardless of macronutrient composition) causes a reduction in energy expenditure known in the literature as adaptive thermogenesis.

I used to be an admin on a low carb forum so I speak from considerable experience here having spoken to and observed hundreds if not thousands of cases over the years. While some people do very well on this diet, many people's health suffers over the long term on this diet which nothing to show for on conventional NHS-type testing so they end up in the offices of various alternative practitioners who diagnose them with things like candida, leaky gut, adrenal fatigue, methylation issues, vitamin deficiencies, hypothyroidism (despite absence of actual thyroid disease), histamine intolerance, SIBO etc. I'm sure you'd agree that these are symptoms forming part of a bigger picture, not diseases per se.

Proposed solutions like carb cycling, seasonal cycling, probiotics, prebiotics, fermented foods, herbal antimicrobials etc. have been trialled extensively and they do not work unfortuantely. I might address the reasons in a future blog post. It's impossible to do justice to such complex topics in a forum message IMO.
 
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well, @Sidereal i am a bit skeptical about all this. i think we are getting into the swamp here - without much light to guide us. imo, this issue is way too muddy to really orient factually, so opinions, personal experience, inferences, etc are what we have right now. some day, i hope, there will be specific and relevant research findings that we all generally understand and agree to to be valid - but that day is not now.

in any event, if i have issues with keto, or if i find some interesting information, i will report back with details.
 

ryan31337

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Thanks @Sidereal for such a detailed reply, it helps to have your warning in the back of my mind as I make choices surrounding this.

Intriguing that we have followed practically identical onset, severity and patterns of remission/relapse. It seems as though we have both managed to exacerbate a mild form of the disease through suffering microbiome changes, albeit by different triggers.

May I ask, do you feel anything helped you recover from the periods of significant food & histamine intolerance/MCAS? Its a shame that we lose one possible avenue of treatment if minimising reactions through restrictive diet guarantees further microbiome disruption. Given that before starting this diet my blood glucose was all over the place and my blood pressure was sometimes north of 200/120 at rest when having reactions... going back is not a great alternative.

Whilst I agree with you on the likely negative effect to microbiome, I sit on the fence with @serusaert and am less convinced we can conclude that ketosis in itself will be negative for all ME patients - too many unknowns, too much variability. But lets hope this awkward workaround soon becomes redundant with proper treatments on the horizon!
 
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Hi @ryan31337


I used to be an admin on a low carb forum so I speak from considerable experience here having spoken to and observed hundreds if not thousands of cases over the years. While some people do very well on this diet, many people's health suffers over the long term on this diet which nothing to show for on conventional NHS-type testing so they end up in the offices of various alternative practitioners who diagnose them with things like candida, leaky gut, adrenal fatigue, methylation issues, vitamin deficiencies, hypothyroidism (despite absence of actual thyroid disease), histamine intolerance, SIBO etc. I'm sure you'd agree that these are symptoms forming part of a bigger picture, not diseases per se.
What you find if you hang out on low carb forums is a range of people who are quite expert on trying to manage the symptoms of long-term keto - depression, lack of energy, panic disorder, anxiety, SIBO, insomnia, etc. They are usually on 4-5 supplements and various prescription medicines. Sleep is always an issue. Discussions of "adrenal fatigue" are everywhere with people trying various treatments for their condition - which is essentially no energy. Various internet hucksters prey on the people with expensive consultations.

Having now observed for 5-6 years people online who have been or are still involved in the low carb world I know of one person who seems to have done well on it - a normal life, normal weight, and apparently no need for Rx meds to sleep or lower anxiety. And if you look at the highest profile person backing the diet now - Gary Taubes - you see someone who has developed in the last couple years difficulty catching his breath and speaking in public without a distracting breathlessness. It's the physiology of low carb. This was a terrible symptom for me in my line of work. I had never had a panic attack or had extreme breathlessness speaking in front of groups until low carb.
 

sb4

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In nature eating keto year round would only happen in cold environments, cold thermogenesis increases dopamine , norepinepherine, etc massively. This would probably solve depression etc.